by Mary on September 4, 2009
Wednesday we were at the doctor’s office for the J-man’s 4-year check up. (He’s doing well, thanks!)
While we were waiting, we watched a drama unfold outside, and it made my heart hurt. A boy, perhaps 11 years old, was fighting with all he could muster to NOT come into the doctor’s office. He broke away from his parents several times and ran, not looking where he was going, just running in a desperate attempt to not have to come into the office. At one point he tripped (the sidewalk turned sharply and he didn’t) and went head-first into holly bushes. Holly bushes. So then he was scratched and bleeding. The parents were doing their level best to get him inside.
Tim and I looked at each other and nodded. Boy with autism. We can pick each other out now.
We learned that the parents had given him a massive dose of Ativan to try to calm him, because he HAD TO come in and get a tetanus shot. He needed that shot. The Ativan didn’t work. (As we were waiting to get flu shots while we were there, we heard a loud cheer for him, because they had gotten him inside, and he had received the shot… so they did finally get him calmed enough.) The nurse didn’t seem surprised that we knew the child had autism – she said it was pretty common for parents of children with autism to be aware of others.
There were parents there in the waiting room judging that boy’s parents. I could feel them and hear whispers (not what they were saying, just the whispering voices). And I knew they had NO IDEA what those parents’ lives were like.
And I could only watch, wondering if we were going to be those parents one day. Right now, the J-man is small enough that we can overpower him (see also: holding him down for shots, and holding him in our arms before and afterward), but there will come a day when that can’t happen.
I don’t have a nice way to tie up this post. There’s no “all’s well that ends well.”
Well, our semi-annual trip to the dentist (aka D-Day) went pretty well. And by ‘pretty well’, I mean we achieved the following goals:
- His teeth got cleaned.
- He doesn’t require any additional dental work.
- The dentist, hygienist, and staff were nice to us and respectful of the J-Man’s needs.
- We didn’t freak out too many other children in the office. (Yay for the separate room!)
- He still agreed to live in our house after it was over.
- No one sustained any major injuries.
I tell people, to an outside observer the whole thing looks awful and probably something akin to torture. To us, everyone got through it, we made some progress, and at least it was better than last time.
We liked our new dentist, too, which was an unknown to us beforehand even though they came recommended to us. The office was smaller, so there weren’t dozens of people and lots of noise and overstimulating crap in the waiting area. It was all fairly chilled out really. I particularly like it when the dentist and hygienists are calm and of even temperament no matter what happens during the cleaning and exam. I think the J-Man could have sprouted flaming arms and horns out of his head and it wouldn’t have affected them any.
We, of course, had to hold him down for everything. I had his torso and legs and occasionally a shoulder. Mary had arms. The hygienist had his head between her forearms and braced against her body while she worked. The fact that she got that spinning cleaner/polisher thing in his mouth and cleaned all of his teeth was pretty amazing, though I know he was in terror pretty much the whole time. [Insert parental guilt here.]
We got through it in 10 minutes or so. When it was done, he calmed down almost immediately in my arms. His ability to decompress after something that stressful is quite a testimony to his growth and general bravery. I can’t imagine much that would be harder on a child with serious oral sensitivity than to go to a dentist. It breaks our hearts to have to do this twice a year. Our hope is that eventually he’ll get more or more tolerant of it if we can set good dental habits and lay the groundwork now.
All that holding him down is not only emotionally painful, it’s also physically rough. Last appointment six months ago, I pulled something in my back and partially sprained my wrist from holding him. Last night, my Achilles tendon hurt (from bracing my feet on the floor) and now my low back feels like I did some sort of marathon weightlifting in the gym or something. Well, Ibuprofen and an ice pack should have it back toward normal in a day or so.
Good news is that his teeth are excellent! I know a lot of parents of autistic children struggle with their dental care. It took us forever to get teeth brushing incorporated into our routine. If we could go to the dentist everyday (perish the thought), he’d eventually get to a point where he’d be much more tolerant of it, but obviously there’s no way in this world that would happen anywhere other than our nightmares. But we can do things that will hopefully reduce his oral sensitivities – something we’ve been working on for over three years now.
We appreciated the calm and positive attitude they had and the respect and sensitivity they showed to the J-Man. So we’re pleased we made the change in dentists and will go back in six months to do this all over again. Each time it seems to get a bit better, so here’s hoping.
Tomorrow is our scheduled, semi-annual dentist day, which we’ll affectionately call ‘D-Day’. We discussed the saga of his last mouth invasion in a previous post. Feel free to read about how much fun that was.
Since the J-Man’s last trip to the dentist, we made an important change. We fired his now former pediatric dental practice.
Were the dentists nice? Yes. There was one doctor in particular we really liked, in no small part because his wife used to work for the doctor who diagnosed the J-Man with autism, so there was awareness and understanding all around about our situation. The problem was, there was no way apparently – at least not for us – to request which dentist we got to see. (I think their practice currently has 4.) The other dentist we saw was OK enough. I thought the hygienists pushed him pretty far, but I kinda get the philosophy behind it. It seems like we weren’t allowed to ask for the one we really liked, and that was irritating.
For us, the decision to fire them was two-fold.
1. All special needs kids are seen only during the noon hour, which not only makes scheduling a nightmare and interrupts his school day (not like we can go back to school after all that), it feels like yet another example of us being segregated from the world. That said, I do understand one of their reasons behind it. Their staff shifts overlap around noon so they have more hygienists there who can gang up on the kids – so to speak – and provide additional support. And really I could live with this if it weren’t for the crap in point #2 below.
They really stretched their luck, however, in that we were seen well over 30 minutes late for our 12:00 appointment last time. Please do not make autistic kids wait that long in a crowded, noisy, pediatric dentistry waiting room with enough noise, TVs, fish tanks, video games, and other insane stimuli to drive us all batty with nothing he could actually do except wander in and out of the chairs like some obstacle course.
So they reserve this time for special needs kids, but can’t actually see any of us anywhere near on time. Well, thanks for nothing.
However, all that alone probably wouldn’t have driven us away.
2. It was the attitude of their staff that did it. They acted like they were doing us this huge favor to schedule us in the first place. Once we got his school schedule for the fall figured out, we realized his originally scheduled appointment fell on his second day back after this long break. So we called many weeks ago to reschedule since we knew he’d need consistency at school after this long break. It’s not like we were set on getting an earlier appointment. We actually asked for an appointment during his next break two months after his original appointment. (Reminder – we called and asked to reschedule weeks ago.)
“I’m sorry. We don’t have anything available until next year.” (insert attitude here)
We know [expletive expletive] well that they have appointments. Just not for him. Before we ever went there, we got in with maybe a couple of weeks notice. Now that I’m sure his file is painted with a giant red flag – or what I’ll call “The Scarlet A” – it’s a six-month wait.
So, we asked around and found a new, smaller dentist practice. Yes our appointment is still during the noon hour, and presumably for the same reasons, which I don’t have a problem with when combined with a respectful attitude toward our kid. At least they were up front about why and were polite and welcoming, and they were able to get us in quickly with no fuss. We’ll see how this carries over into the actual appointment.
Just to be clear – no I don’t expect anyone to roll out the red carpet for us. I don’t expect sympathy or special treatment or anything. But I do expect the J-Man to be treated with respect and as a child with feelings and integrity regardless of whether he can talk to you about them or not. He is scared to death of having his mouth worked on – and we feel like crap as parents enough as it is for putting him through that – and if you’re not understanding and sensitive to that about him, you can go to hell. And if you want our business, don’t act like you’re doing us favors. Nobody is that good.
Enough ranting. Gotta go practice my restraint holds and find something to wear to protect my more sensitive bits from injury again.
Background info: we’ve pulled out lots of the J-man’s old toys for Little E to play with/watch lately. (Little E won’t be little for much longer. Maybe we should just call him Dale Jr.)
When the J-man was about 21 months old, we had a “full evaluation” from the county. They came to our house – a doctor, a developmental therapist, and one other therapist person. It still rates in my mind as one of the hardest days we’ve ever had, and I’m including when we all had the Norovirus and the J-man was hospitalized.
The things that stood out were this:
1) the doctor YELLING at the J-man when he wouldn’t comply with the tests. Hey, I wouldn’t want to pick up your stupid dolly either if there is a cool car with spinning wheels available. (We heard through the county grapevine that the doctor was eventually reprimanded because of his behavior during that evaluation, to give you perspective.)
2) the J-man wowing them with some of his skills
3) the J-man NOT wowing them with skills it wouldn’t have occurred to me he should have been able to do at that point.
4) the way everyone danced around the word “autism” until I flat out asked them if that was what we were dealing with. (“We don’t really know at this point, but don’t think that’s it.”)
and
5) the way the evaluators made us feel like the world’s worst parents for allowing the J-man to play with the toys we had out in the living room. No kidding! They told us that the reason he was testing behind in several areas was because his toys weren’t advanced enough. We were holding him back! It was our fault! If we had just gotten him better toys, he would be fine! (All of those toys were in fact made for kids up to age 3, but I digress.)
That night (after I cried), we packed up most of the J-man’s toys and put them in the attic. No more “World of Learning;” no more “Mr. Star” (just a fabric star that plays music); no more thingie where you put the ball into the tunnel and it made music play. In their place, we put out other things, but those were toys that the J-man loved, and he looked for them for a long time afterward.
And now that some of them are back out (World of Learning and Mr. Star), he plays with them again. He’s SO happy to see them. He actually plays with them quite differently than he did back then. Huh… could it have been the kid’s developmental stage and not the toy?
And when I see his excitement over shaking Mr. Star to make him play for Little E, I get teary eyed… and I get angry. Oh yeah, the Mama Guilt from listening to “experts” will get you every time.
by Tim on February 19, 2009
As a preamble to the upcoming sequel to “What’s Your Autistic Toddler Like?” (coming very soon!), I thought we should first go straight to the source in which the diagnoses are defined – the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. (Technically, it’s DSM-IV-TR, where TR stands for ‘text revision’, but whatever.) The people who evaluate your child don’t sit there with just this list and check off boxes, though. The diagnostic tests they do are far more nuanced, but they are in their own ways based on these criteria.
This is one place where those five-digit codes – known as ICD-9 codes – you might see on medical forms and reports (e.g., 123.45) come from. For the record, ‘Autistic Disorder’ is 299.00 and Asperger’s is 299.80, in case you were wondering.
[Standard Disclaimer - This is not some diagnose-it-yourself kit for you to use on your child. A formal diagnosis must be made by a qualified, experienced professional. This is just to give you some idea of what you are looking for. If you suspect your child may have autism, read our "Five Things You Can Do If You Think Your Child Has Autism" post, and especially note the M-CHAT questionnaire. Don't just say, "My kid only gets 5 out of 6 so there's nothing to be concerned about." It's important that you go over any questions and concerns with qualified people; don't just go 'by the book'.]
This is what that text says (below, or “Click to Continue” if you’re reading this as an excerpt). I will say one thing before plowing ahead – our children and their challenges are far more complex than what can be covered in a diagnostic manual. Think of this like a starting place where the road that follows is full of difficulties, surprises, challenges, unknowns, adventures, and joys.
[click to continue…]
by Tim on February 9, 2009
One of the bazillion transitions we have to think about on the road to Baby #2 is what to do about the fact that the J-Man is still sleeping in the crib we planned to use for the new baby.
The original idea was to convert his crib into a toddler bed (we have the convertible kind) and then move him into a separate, plain-old toddler bed. At that point, we’d convert the original bed back into its crib state and put the new baby in it. Sounds dynamite on paper. Well, not really, come to think about it, especially when part of this deal is that at some point when the baby moves out of our room, the J-Man may get the room at the end of the hall (i.e., not his current room).
The obvious flaw in the argument is that this is a lot of change to ask an autistic toddler to deal with. The implementation of this plan admittedly had us overwhelmed too. He sleeps very well for the most part, and woe unto anyone who says anything to put that at risk. He didn’t sleep through the night until 16 months old, and even then it took a while after that to get into something like a normal pattern. For most of the first part of his life, he woke up every two hours, every day.
I went in there tonight and watched him sleeping. He’s crammed into a corner of the crib – as he is every night – because it makes him feel safe and relaxed. This is the place where he’s slept for 3 1/2 years. He’s figured out how to find rest here.
I see how peaceful he looks. I think about how hard many days are for him. I think about all the challenges he has to face in his life. And the conclusion seems obvious as I write this.
Buy another crib.
[click to continue…]
